Click the picture for the story of Calypso, the Three Legged Green Sea Turtle, and why she's my symbol

Sunday, May 29, 2011

Boot Camp: Day 4-5

Boot camp continues. It's a lot of work and they really crack the whip, leaving me dead to the world once I get back to my bed. There are a few updates that are cool and I wanted to share with you.

Harness

The Therastride system, suspending you over a treadmill with the harness taking your weight is one strategy I've already talked about. A different method they've been trying with me is to have a harness that doesn't directly take any of my weight. Using the leg brace, I'm forced to walk without crutches or canes using the harness only in case of emergency. This harness is suspended over the floor with a series of movable track options it follows. I walk up and down, simulating as best I can walking without any assistive devices.



AFO


The Ankle Foot Orthosis is a device that braces the ankle but not the knee. This is the device I hope eventually to move to full time. While stabilizing the foot, I now cannot subconsciously cheat and use the ankle to brace my leg. I now have to rely on the knee to hold my weight, something my knee is not excited about at all. But it's coming along. It is a goal to work toward, a thing I'm always in need of.



So I'm being the guinea pig for multiple rehab walking strategies. We'll see what helps and what doesn't. But for now it just makes me physically exhausted.

Tuesday, May 24, 2011

Boot Camp: Day 2-3 - Days Full of Pep

Day 2
I had a doctor's appointment early Tuesday. In the questionnaire they had me fill out they posed this statement:

I am full of pep.

They had me rate it on a scale on how true this statement was for me. I've taken this survey before but every time I see this I started giggling very quietly to myself. That question that early in the morning is always hilarious.

These past two days haven't been full of too much pep. Yesterday my brace started out peppy but died after about 20 minutes. I'm retiring the new brace for the rest of the trip, until we can send it back to the company for repairs which should take about a week.

Yesterday I got onto the therastride again. This machine positions you over a treadmill with a weight supporting harness. Everything is controlled by a computer which tracks the weight you are supporting on your own, the distance walked, and your speed. The previous times I've used the therastride I'd need large amounts of help swinging my left leg through and keeping the leg straight. Now that I have some muscles at the hip I only have to have help keeping the left leg steady.





This is a rather arduous process that takes the work of several staff members. It is nice to be able to walk in an almost normal fashion on dry land again. But the coolest thing to happen was the muscle contractions of my left quads (thigh). Here is a video of the newly strong muscles at work:



I also got into the therapy pool for the first time on Tuesday. The water is my natural element so I flourish there. Kennedy Krieger has a pool with an adjustable floor height and underwater treadmill, complete with cameras built into the walls so you can see what's happening underwater.





Day 3
I am not a morning person at all and apparently my therapist really is. So this morning as I yawned, my body creaking and cracking, she was bouncing along full of energy. As the day wore on and I started waking up she got more tired. As she finally said "see, I'm finally getting tired" all I had to say was a resounding "HAH!"

Now we didn't get to walking with canes on the previous day because right before we were going to, the computerized leg brace died again. So on Wednesday we brought the old leg brace and decided to start with canes. We took a small field trip and walked down to the fish tank downstairs and the garden path just outside.

Apparently I made walking with two canes look too easy so once we returned to the PT gym my canes were taken away and I was given a quad cane instead. I've used a quad cane before with good results so I wasn't too worried. Still unsatisfied with how easy I made it look, my therapist asked me why I couldn't just use a single cane. I didn't have a good answer so I picked up one of my canes (notice the flames on the side) and this was the result:



Needless to say on both days, after three hours of physical therapy and one hour of pool therapy I was beat. At the end of the day I was definitely out of pep and ready to crash for the night.

Monday, May 23, 2011

Boot Camp: Day 1

Today was full of paperwork, evaluations, and tests. They haven't seen me in 5 months so they wanted to objectively access the progress of my recovery. Lucky me.

They tested flexibility which has improved slightly in my right leg. My left ankle (the weaker leg) has tightened up, most likely due to the fact that it lays limp during my sleep. This causes the muscles to weaken and shorten, making it more difficult to use the foot when I walk. I'm really supposed to use a piece of equipment, a Multi Podus boot, which keeps my foot fixed in place during sleep. I've almost never used mine because it's bulky and uncomfortable, besides the fact that I roll around in my sleep.



So my therapist suggested a lighter piece of equipment, made of fiberglass casting material (think of when you break your arm and they put you in a caste) combined with Velcro. They will be able to make it while I'm still in Baltimore so that I cans start using it as soon as possible. I'll keep you posted as this develops.

With muscle strength tests I excelled. The muscles that were just waking up in January are now strong and muscles that were missing are now reappearing. My quads (thighs) are strong, my hamstrings are weak, and the calves are moving for the first time in a year and a half. The ankle remains stubbornly still.

I had been excited to show everyone my new computerized leg brace but it's on the fritz. So I put on my old wire and cogs leg brace. And I kicked butt! The two major tests that are done are the 6 minute test and the Disabled Angry Bear Test (10 meter test). In the 6 minute test you see how far you can walk in 6 minutes. I doubled the distance I could walk in January. In the Disabled Angry Bear Test (how fast you could run if you were being chased by angry bear, with the bear having a disability of some kind) I shaved it down from 10 meters in 12 seconds to 8 seconds. So basically I'm squashing all my old records.



After this we walked up two flights of stairs, something I learned the last time I was at boot camp. In my therapist's words "you make this look easy!" Forget about it, I've got that one covered.



The coolest thing in my opinion was the response my legs had to be the electrical stimulation. Kennedy Krieger believes in the heavy use of electrical stimulation on disabled limbs; research has shown increased muscle and nerve growth when electrical stimulation is used along with a full PT program. There are two different systems that KKI uses, the Empi Stim Unit and Swiss Stim Unit. Swiss Stim is an electrical stimulation unit that varies the parameters of the electricity that is pumped to to the muscles; the hope is that somewhere on this range of wavelengths the muscles receive the signal they are waiting for and contract. A vary useful rehab tool, the company that made them unfortunately stopped production a few years ago.

Therapists have used different stimulation units on me since last February. In all that time, the left leg has never responded, the right has always had huge muscle contractions from the beginning. Today we put the electric pads on my legs to try it out, to cross it off the list of things to try. Me and my therapist were both shocked when there were weak contractions with the Swiss Stim Unit. Trying the Empi Unit as well we proved that it was contracting and not just a fluke. Both my glute(butt) and hamstring showed weak shaky contractions, the work of inexperienced new muscle. If the increased movement in my legs didn't prove to me that my nerves are regrowing, this settle it.

So a lot of promise. Two weeks to look forward to. We're going to work on integrating canes into my walking, figure out exercises, work on fixing any hitches to my gait pattern, and work in the pool on the underwater treadmill. I likely won't be writing a ton because I'm usually dead tired after these sessions but I will try and keep everyone in the loop as much as I can.

Beat Union "Pressure Zone"


Saturday, May 21, 2011

A Passing Moment

I sat on the back porch looking up at the sky. It had rained earlier, leaving drops dripping from the gutters and railings. The clouds had moved on leaving a ghost of a storm behind. In the distance the clouds covered the horizon. Every so often a brief spark of light shown, lighting hitting the earth so far away the thunder never reached our shore. All was silent.

For a second the clouds parted leaving a bare patch of sky. Through that window to the heavens no stars shown, only the one winking light of a satellite as it danced its way across the darkness. It was there for only a second, moving in its steady slow march, flashing its unintelligible code to remind us that it was there. Then the clouds moved together again leaving only muddled night.

As the clouds shifted and swirled, the moon shown through for a minute or two. Not the bright shining beacon it usually is, it hid behind the swirling clouds. Its usually bright yellow was muted and gray. For the briefest of moments it appeared orange, glowing as only the fickle moon can. It was if it too was tired and weighed down by some unspoken thoughts. And then the clouds rolled in again and there was darkness.

The last of these passing lights was only a spark. A firefly made its way through the yard, passing quite close. As the insect moved fast, the flashing light became a streak. It went out, then shown again. You wouldn't have even known it was there except for the dashed lines of color it left in its wake. It imitated the electron, so fast and brief that you couldn't see where it was, only where it had been. It swayed back and forth, finding the rhythm and beat that only it could hear. This buzzing point of energy cut its path through the yard finally making its way to the bushes and out of sight.

Then all was dark and quiet again.

Friday, May 20, 2011

The Council of Disabled Animal Friends, Part 2

I wish to continue introductions for The Council of Disabled Animal Friends. Each is a different shape and size and all have been with me for different amounts of time. They have all offered me much needed support of many different kinds throughout this past year and half.

Diego the Tortoise and Ned the Green Turtle


Both of these shelled critters have Bipolar Disorder (Manic Depression), a disorder where people to switch between periods of lethargy and depression and periods of elevated mood and hyperactivity. Diego is currently in a more lethargic phase while Ned is currently in a hyperactive phase.

Diego was a birthday gift from my sister, adding to the already extensive collection of turtle/tortoise related stuff I already have. He is a puppet and hails from Spain. He is in charge of foreign outreach and exchange programs for the council, because disabilities are not limited to this country.

Ned was a find at a thrift store on my recent trip to Minnesota. He is the activities director for the council using excess energy planning fun and exciting events. He does require help from Diego and Marvin the mouse when he is in a depressed mood.

Sheila the Stingray


Sheila has a spinal chord injury resulting from a careless driver of a motorboat. The injury is quite low on her spine, so she has use of her fins, gills, and all upper functions. Due to her injuries she can no longer use her tail or stinger, impeding her movement slightly and her ability to catch any prey. She came to me as a homecoming gift when I briefly returned to Colorado. Sheila is Aqua Therapist for those of the group who require physical therapy, using her extensive marine knowledge to benefit the council.

Dexter the Strawberry Poison Dart Frog


Dexter has nerve damage due to myasthenia gravis, a neuromuscular disease that causes muscle weakness. To assist in his ability to cling to different surfaces, he uses magnets attached to his feet. Dexter was given to me as a birthday gift after a high school trip to Costa Rica, where I got to see strawberry poison dart frogs in the wild.

Dexter is the mental health councilor for members of the council. Disabilities of any kind affect the demeanor and mental status of even the strongest individuals; Dexter provides support for every member of the group in dealing with life on a day to day basis.

Lilly the Sea Otter


Lilly has obsessive compulsive disorder, expressed mainly by compulsive munching on kelp even when full. She was another homecoming present when I returned to Colorado for a few months. Lilly is the scribe for the council, taking fastidious notes of every meeting, event, etc. Though many times a disability can be seen as a hindrance, each individual's talents and specialties can be extremely useful if directed correctly.

More to come later...
The Council of Disabled Animal Friends, Part 1

Thursday, May 19, 2011

Boot Camp

I'm going back to Kennedy Krieger! I haven't been back since January for a round of BOOT CAMP!



For anyone who missed the update in January I'm going to be spending two weeks of hard work, 5 days a week of 3+ hours of physical therapy. It's kind of like a booster shot for my physical therapy program. They measure quantitatively where I am physically, see what my goals are, and see what I can do. Last time I went we spent a lot of time working on my gait, on weight shifting, and on endurance.

Though I know this depends on me I'm hoping to see a change from where I am now. In January I came in tired, worn down, and hardly walking at all. I left doing stairs, walking with canes, and walking long distances. This time I'm feeling pretty good, walking around with my new robo leg, although at the moment it's only working sporadically. I'm not using canes nearly as much as I should but I walked for over 2 hours with my crutches when I visited Minnesota.

I need to find some goals to work on but I know whatever they are, I'm going to be doing better then I am now. I always feel like my PT program has gotten a huge shot of adrenaline when I go. I love KKI and every time I leave feeling energized and excited about life again. I miss everyone there and I can't wait to get back!

Wednesday, May 18, 2011

****ing Expensive High Tech Piece of ****!

So what happens the week before I'm scheduled to go back to Kennedy Krieger for boot camp? My leg brace goes schistzo and decides to stop working!!!



So I wore it to and from Minnesota, which was a surprisingly uneventful trip through the airport. I wore it this morning to and from physical therapy, no problems. And then during lunch I get up and the computer is dead. I turn it on and off a few times to make sure I didn't just hit the switch by accident. Nope, still dead. I sit down to give the computer and leg brace a closer look and magically it's working again. I stand up, it lasts for 1 step. Then it's dead again. We go to the car and as soon as I've stiff legged it over there. As soon as I'm in the front seat again, the leg is working again. It makes it three steps before it dies again.

I know it is not a dead battery because I charged it up the night before. The computer is supposed to last 30 hours of the motor running. My best guess is that there are some loose wires somewhere in the leg brace. A leg brace of mine would have to have a few loose wires what with my brain being a little strangely wired to begin with.

Monday, May 9, 2011

Flying

Tomorrow I will be taking by first plane ride since right before the accident. I'm going to visit my brother, my sister-in-law, and my sister in Minnesota. This is a little more complicated than it used to be.



For one thing I now have a lot of extra gear to take. I'm going to be taking my leg brace and my wheelchair, a guaranteed nightmare through security. I'm guareenteed to be searched, padded, prodded, wanded, groped... I just hope I don't run into the TSA agent with something to prove. The leg brace will no doubt throw them through a loop since even people familiar with leg braces are usually taken aback when they see it. I need both but I'm sure everyone will think it completely bizarre to be wheeling in wearing a giant leg brace.

I've got to wheel in wearing the brace, leave it off at the gate for my plane, and walk onto the plane. For once I get to answer the call "If anyone will need extra time to board" along with the elderly, infants, etc. I try not to let my pride be wounded by being lumped with the infirm; after all my stance isn't really that firm anyway. Once on board I can either just leave it on or stow it but I haven't decided which yet. We'll see how the day goes I suppose.

So barring the unforeseen, I should be in Minnesota tomorrow evening with a leg brace to walk in and a wheelchair to use when I'm not wearing it. Not an insurmountable challenge, just one that will cause me a fair bit of annoyance. And I remember thinking how much of a pain it was to have to remove your shoes when going through security.


Saturday, May 7, 2011

The Council of Disabled Animal Friends, Part 1

Since my nerves are screwed up, I occasionally get moments when the nerves go haywire and send me random nerve sensations. These can be pretty freaky,making me feel like a bunch of loose wires a curious kid has hooked up to some batteries. These sensations can range from barely there to annoying to uncomfortable to painful. It's impossible to tell which it's going to be.

So during these times it's very helpful to hug a stuffed animal. Since I'm essentially a five year old on the inside anyway I have a small collection of them around. I've since dubbed them the Council of Disabled Animal Friends.

I took pictures of the ones I could easily find on hand. I'll will post more as they return from whatever portion of the globe where they are currently on vacation.

Marvin the Mouse


Marvin is blind. He met an unfortunate accident when the buttons that were his eyes were chewed off by the cat of his previous owner. He is chairman of the council, since he has been stuffed animal in residence for the longest period of time. He makes sure that all bylaws of the the council are followed and the special needs of all its participants are met.

Ralph the Cold Bug

Ralph was born with no arms or legs. He belonged to a dear friend of mine until recently, given as a gift way back in high school. When word got out that I was in a car wreck she sent Ralph to me, figuring I could use the company of an old friend. And in that capacity he has excelled. Ralph is head of security for the council; since he's a cold bug he knows the ins and outs of disease and other potentially disruptive elements.

Eric the Sea Turtle

Eric has learning and behavioral disabilities (the tongue), though it's impolite to ask too many questions. He was the gift of an amazing friend out in Colorado. When browsing through a yard sale, she saw Eric and was reminded of me (I've had my association with turtles for a long time). She told the story of my accident and recovery to the women running the yard sale, who gave Eric to her for free. She held on to him until I move back to Colorado. Eric is in charge of public relations for the council. I mean come on, who wouldn't love this guy! As he is the biggest and squishiest of the council, he is the one most often hugged in times of emotion or crisis. He doesn't say a whole lot, but if you need him he's there for you.

More to come later...

Sunday, May 1, 2011

Bike Awesomeness



Excited as I was to put the bike together right away it turned out to be more of a challenge then I had thought. It came in different pieces, all with odd shapes weird angle, and funky configurations, screws that needed to be tightened, loosened, moved, jiggled... It was a hot mess of random looking parts. Even with directions it took about a week to put together (due in part because I've been fiendishly busy). But it's finally together.


Putting my bike together piece by piece.


Getting a better angle.

I took it out for a test drive as soon as I could. It's an amazingly smooth ride, easy on the shoulders, which can be a problem in just a regular wheelchair. And it looks freakin cool! The has a very wide turning radius and like any adult bicycle you can't backpedal. But as long as I watch where I'm going it works beautifully.


Pretty comfy.

On my first test run I learned two things: always double check every nut and bolt before you take out a new bike, and wear pants if your legs are dangling inches above the ground. Fortunately nothing worse happened than my backrest coming loose and dirt covering my legs, but good lessons to learn nonetheless.


Hitting the road!

I've made a couple trips on it now, each ride increasing the distance I cover. I'm now up to 8 miles (we checked that using the car odometer earlier today) and wasn't even beat. I've got nothing but flat open road for miles and miles so we'll see how far I can go. One of my friends who is a runner has pointed out that in the half marathon that he ran there was a contestant with a hand bike. My sister has been insisting from the beginning that we should enter a race of some kind together. When I join one of these I'll let everyone know and I'll make sure to post pictures.